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FactsheetLUCENTIS ON THE NHS
The guidelines set by the National Institute for Clinical Excellence (NICE) should mean that Lucentis, the drug used to treat Age Related Macular Degeneration, is available to more of those who need it but some Primary Care Trusts are unwillingly to implement the change.
Peter talks to listener Charles Chapman and the Tom Bremridge of the Macular Disease Society.
THE MACULAR DISEASE SOCIETY
Tel: 0845 241 2041
The Macular Disease Society is a self-help society for those diagnosed with any of the eye conditions encompassed by the overall name of Macular Disease. The Society is dedicated to providing information and practical support so that those with the condition may make the most of their remaining vision.
71 High Holborn
Tel: 020 7067 5800
Our reporter Mani Djazmi joins us for a round-up of news of special interest to In Touch listeners including Dave Heeley’s plans to run seven marathons in seven days to raise money for the Guide Dogs Association.
In contrast to Mani’s own experience last year we also hear listener Jackie Cairns’ rather positive experience of being in hospital and have a round up of feedback on last week’s report on the abuse of the partially sighted.
GUIDE DOGS ASSOCIATION
Tel: 0118 983 5555
105 Judd Street
Helpline: 0845 766 9999
Tel: 0207 388 1266 (switchboard/overseas callers)
The RNIB provides information, support and advice for anyone with a serious sight problem. They not only provide Braille, Talking Books and computer training, but imaginative and practical solutions to everyday challenges. The RNIB campaigns to change society's attitudes, actions and assumptions, so that people with sight problems can enjoy the same rights, freedoms and responsibilities as fully sighted people. They also fund pioneering research into preventing and treating eye disease and promote eye health by running public health awareness campaigns.
HENSHAWS SOCIETY FOR BLIND PEOPLE (HSBP)
John Derby House
88-92 Talbot Road
Tel: 0161 872 1234
Henshaws provides a wide range of services for people who have sight difficulties. They aim to enable visually impaired people of all ages to maximise their independence and enjoy a high quality of life. They have centres in: Harrogate, Knaresborough, Liverpool, Llandudno, Manchester, Newcastle upon Tyne, Salford, Southport and Trafford.
THE GUIDE DOGS FOR THE BLIND ASSOCIATION (GDBA)
Tel: 0118 983 5555
The GDBA’s mission is to provide guide dogs, mobility and other rehabilitation services that meet the needs of blind and partially sighted people.
ACTION FOR BLIND PEOPLE
14-16 Verney Road
Tel: 0800 915 4666 (info & advice)
Registered charity with national cover that provides practical support in the areas of housing, holidays, information, employment and training, cash grants and welfare rights for blind and partially-sighted people. Leaflets and booklets are available.
NATIONAL LEAGUE OF THE BLIND AND DISABLED
324 Grays Inn Road
Tel: 020 7837 6103
Textphone: 020 7837 6103
National League of the Blind and Disabled is a registered trade union and is involved in all issues regarding the employment of blind and disabled people in the UK.
NATIONAL LIBRARY FOR THE BLIND (NLB)
RNIB Customer Services on 0845 762 6843
The NLB is a registered charity which helps visually impaired people throughout the country continue to enjoy the same access to the world of reading as people who are fully sighted.
Trustees from the Royal National Institute of the Blind (RNIB) and the National Library for the Blind (NLB) have agreed to merge the library services of both charities as of 1 January 2007, creating the new RNIB National Library Service.
Equality And Human Rights Commission Disability Helpline (England)
Stratford upon Avon
Tel: 08457 622 633
Textphone: 08457 622 644
Fax: 08457 778 878
Mon, Tue, Thu, Fri 9:00 am-5:00 pm; Wed 8:00 am-8:00 pm.
Equality and Human Rights Commission Helpline Wales
3 Callaghan Square
0845 604 8810 - Wales main number
0845 604 8820 - Wales textphone
0845 604 8830 - Wales fax
9:00 am-5:00 pm, Monday to Friday (an out-of-hours service will start running soon)
Equality and Human Rights Commission Helpline Scotland
The Optima Building
58 Robertson Street
0845 604 5510 - Scotland Main
0845 604 5520 - Scotland Textphone
0845 604 5530 - Scotland – Fax
9:00 am-5:00 pm, Monday to Friday (an out-of-hours service will start running soon)
DISABLED LIVING FOUNDATION
380-384 Harrow Road
Tel: 0845 130 9177
The Disabled Living Foundation provide information and advice on disability equipment.
The BBC is not responsible for external websites
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TX: 22.01.08 2040-2100
PRESENTER: PETER WHITE
PRODUCER: CHERYL GABRIEL
Good evening. Just before Christmas was the last time we reported on the subject of Age-related Macular Degeneration and we found out how much nicer NICE was getting. But apparently this hasn't rubbed off on all the primary care trusts yet. Today, we'll be hearing from someone still involved in the struggle to get the sight-saving drug Lucentis. And later Mani Djazmi will be rounding up news of special interest to visually-impaired people.
During the last six months we've been following the twists and turns in the fight to get Lucentis - that's the drug which has been proven to be highly effective in halting, and in some cases even reversing, AMD. But so far it's proved too expensive for most PCTs in England and Wales to provide on the NHS. One man who's been battling to get Lucentis is Charles Chapman from St. Albans in Hertfordshire. He was originally referred to Moorfields Eye Hospital, here in London, back in October 2006, where he saw consultant Adnan Tufail. But as Charles explained to Mani Djazmi, he didn't get the news he was hoping for.
He said: "Well if you'd have presented in front of me three years ago," he said: "I would have said to you I'm sorry Mr Chapman you're going to go blind, we haven't got the drugs, we haven't got the equipment, regretfully, thank you very much and bye bye. Now", he said, "it's even worse because we have the drugs and we have the equipment to treat you but the National Health Service won't pay for it". I said: "What is the prognosis for my eyes?" He said: "Your right eye, the one with wet AMD, several months. The left eye, the one with dry AMD, maybe two years". I then said to him: "Well what do I do now?" He said: "Well your only option is to go privately." And I subsequently saw him and had five injections at a cost of roughly £800 a time. I suppose the sum worked out at somewhere round about £5-6,000. I then came to the end of my finances, I just could not simply afford to pay for anymore and I then went back to see Mr Tufail at Moorfields as an NHS patient where the battle continued. No funding, no funding, no funding.
Then, last December, there seemed to be a light at the end of the tunnel, when NICE reversed its highly controversial guidelines which said that only people who were already blind in one eye were eligible for Lucentis.
Following that I went up to Moorfields Hospital to see Mr Tufail and said: "I think you've got some good news for me, Lucentis can be used." And then he said: "I'm sorry but no it can't," he said, "we haven't no word from your PCT about funding on this." Quite frankly it has been like fighting a war of bureaucratic fog.
And until just a few days ago, we thought that was that, as far as Charles Chapman's story was concerned. But when Mani Djazmi went to interview him again he found there was something of an update. Mani's with me in the studio. So what's new, what's changed?
Well I went to see Mr Chapman expecting our interview to only be about his story of continuing frustration. But just a couple of hours before I arrived at his house last Friday morning Mr Chapman had received even more news.
This morning I had another phone call from the PCT commissioner to say that my funding had been approved and she'd got some good news for me. She previously spoke to me yesterday and said that following a conversation that she'd had with my GP, who in turn had phoned her a few days before to find out what the hell was going on, things have finally started to move. Yesterday she said I'll have to put it through to one of the higher authorities within the PCT to see if you're eligible for this funding. And I said: "Well this has been going on since July, at least, if not longer, can you explain that?" And she said: "Well no I can't." And to cut a long story short she said: "But I am pursuing this vigorously." And this morning she phoned me to say that well the good news was that a. I had Lucentis funding, although I didn't meet the criteria. So when I said: "Well can you explain that?" And she said: "Yes, you've got it under special circumstances because your wife is disabled."
So it's not because your eyesight is deteriorating and you're going blind?
You've got it. I have known that there were special circumstances in the past because I have been in touch with the Royal National of the Blind and they were putting forward a thing for me under special circumstances.
And how do you feel that it's taken something like your wife's disability to give you this drug in the end?
Well I find it quite appalling, absolutely disgusting that you have to have special circumstances to stop the citizens of this country from going blind. I feel it - ugh - I shall get emotional in a minute.
Given the number of twists and turns which have characterised this saga, this journey of yours towards Lucentis which you've finally been given, is there a part of you which regards today's great news with a certain amount of trepidation and apprehension?
I have been assured this morning that I should hear from Moorfields with an appointment within two weeks and I've been given names and telephone numbers. However, having gone through what I've gone through I will believe it when Mr Tufail sticks the needle in my eye for the first time.
Well we wanted to know what was going on as well. We contacted the West Hertfordshire Primary Care Trust, which looks after Mr Chapman, and this is what they told us.
Statement from West Hertfordshire Primary Care Trust
Hertfordshire PCT's criteria essentially give priority for treatment to patients who have already lost sight in one eye and still have a reasonable level of sight in the treatment eye and have not already had another type of treatment called photodynamic therapy. The intention of these criteria is to ensure that patients who are most likely to respond well get treatment promptly. We're happy to consider patients who do not meet these criteria through our exceptional treatment process. Once final NICE guidance is issued our criteria will be amended as appropriate.
Well listening to Mr Chapman's story and that statement is Tom Bremridge, who's the Chief Executive of the Macular Disease Society, who joins us from Southampton.
Tom, what's your reaction to that and these criteria which now appear to have been used to give Mr Chapman his Lucentis?
Well first of all Charles Chapman's example is absolutely typical of the shambles that the Department of Health have been presiding over since this process began in January 2007 with 152 PCTs all making up their own minds and having individual policies. The treatment availability for patients has been completely diverse throughout the country.
What about these special circumstances, I mean you're obviously glad that Charles is going to get his treatment but what do you think about these criteria which say that he gets it because his wife's disabled?
Well all the primary care trusts who've been obstinate and intransigent have been operating a policy of their exceptional circumstances committees or special circumstances. But in no case will they ever define what constitutes a special circumstance. And you'll note from Charles's position that he's been trying to get himself through the special circumstances committee since October or much earlier last year, so they can be as obstinate and as difficult as possible in order to avoid paying money. And it's only when they have a whiff of the media coming on the scene that whoops suddenly there's a reverse gear.
Do you think that's it, I mean why do you think they have suddenly, apparently suddenly, changed their mind?
Because I think they detected some pressure coming on them and revelation in the media that they treated Mr Chapman extremely badly.
Tom Bremridge thanks for the time being, we will come back to you.
Well as I mentioned earlier, Charles Chapman's consultant is Adnan Tufail and he told Mani that the prevarication by NICE on setting out clear instructions to PCTs, in the first place, has led to these odd criteria for Lucentis treatment, such as special circumstances.
I think inconsistencies in a way a drug is given is always problematic and the body NICE is supposed to decide on drugs to allow patients to get access to these drugs on a consistent and rational basis. However, because of the prolonged delays in NICE making a final decision this has led to a vacuum where different local health authorities have made different criteria for providing the drug. And although I can't talk about this one particular case I'm very pleased that he's now finally got access to this very important and effective drug.
It's a bit of a mess isn't it, it seems completely random and that some people are getting it and some people aren't getting it purely based on how generous their primary care trust happens to be.
Unfortunately I agree that is the case.
And you know how effective is it?
Lucentis stabilises vision in 9 out of 10 patients treated and can recover vision in one third, approximately, of patients treated. So the earlier the drug is given before there is greater visual loss the more effective it is.
And is there a point at which Lucentis becomes redundant because the deterioration is just too far gone and typically how long does that take?
Once the leak from wet macular degeneration has been there for a long time the leak turns into scar tissue. Once the centre of the back of the eye, the macular, is predominantly scar tissue and there is not much leak Lucentis, which works by stopping leak, is not longer effective and then you have an irreversible situation. The problem is there is a variability in the time from the leak starting to forming a scar. In some patients it can be a rapid progress over several weeks, in other patients it may be several months. And because of the variability it's better to treat early, i.e. within weeks of onset of symptoms than later. Until the drug is given in a consistent manner on the NHS there will be patients who will suffer as a result of this unfortunately.
Tom Bremridge of the Macular Disease Society, just finally, what has to happen before the primary care trusts are bound by NICE's decisions, what's the timescale?
Well first of all just going back over what Adnan Tufail and Charles Chapman said, I mean the Department of Health and NICE should stand in the dock together charged with health crimes for abandoning patients to go blind while they faff around and finally come up with their decision. They've taken six months longer than they should have done. Now what the situation is now is that the next appraisal meeting of NICE is on the 13th February. After that NICE have a further five weeks before they must produce their final recommendations and then provided nobody - none of the consultees - go to appeal the National Health Service will be given a further three months to implement a service, you're talking about towards the end of June before the NICE recommendations become completely mandatory for the PCTs to implement.
Tom Bemridge thanks very much indeed.
Which is where we have to leave this for the time being but this does seem to be a never ending story.
Now we've been working Mani Djazmi pretty hard this week because Mani you've also got a round up of news of special interest to visually-impaired listeners, what have you got for us?
Well about a year ago, I reported on my rather negative experiences of staying in hospital. Patronising staff, most of whom didn't know how to guide me and some of whom preferred to talk about me instead of to me, even though I was in the room at the same time as they were and all this in an eye unit!
Well Jackie Cairns from Fife has contacted the programme with a rather different tale. She spent Christmas in hospital recovering from a spinal operation in Aberdeen.
They gave me a room of my own with an en suite bathroom which made getting around as a non sighted person a lot easier than being in a ward where they have chairs strewn about after visitors and so on. After the operation I couldn't move so they were able to feed me lying down, I couldn't manage to do everything like that myself and they would sit and feed me literally with my meals so that I could get it while it was hot.
Wouldn't they have done that anyway if there was someone who had the operation that you had?
Not necessarily no, I've been in hospital closer to home where they've pulled the table right up as far as to the bed as they could get it and then said you're be able to manage, just eat what you want and they've gone away. I just think that they went to the extra length in Grampian and they were really very good with my husband as well because he is non sighted as well and they arranged for porters and nurses to take him to and from reception to the ward and back, to get his taxi - they were just really good. And then when he came in they fed him, his lunch, they gave him unlimited visiting and I don't think they have to do that.
Jackie Cairns with a good news story about staying in hospitals.
"Perhaps the ultimate in physical endurance", is how the explorer Sir Ranulph Fienes has described the challenge of running seven marathons on seven continents in seven days.
So far, Sir Ranulph and his partner in exploration, Dr Mike Stroud are the only people ever to attempt the feat. But, Dave Heeley, a 49 year old blind carpenter from the West Midlands has decided to take it on in April. Starting in the Falkland Islands, he'll be running in Santiago, Los Angeles, Sydney, Dubai and Nairobi, finishing with the London Marathon on April 13th - in all that's a total of 183.4 miles in seven days.
He's doing it to raise money for the Guide Dog Association, but he's also hoping to become something of a role model for other visually impaired people.
Everybody's got their own particular goal, this is mine, yeah. But their goal could be a little old lady who is struggling through confidence, blindness, can't get to the corner shop. Now I'm hoping that if she looks upon this challenge and says well hang on a minute, he can do that and that was his goal, my goal is to get down to the corner shop and if I can do that then I've won. And if I can inspire somebody to do that then I think you know every painful step is going to be worth it. If there's something out there that you particularly want to do there is nothing in this world to stop you.
Seven marathons in seven days, just explain the training that you have to go through to be in any kind of shape for that.
We're training twice a day but we're not always running. I mean the main basis of it is running on the road and plenty of miles but we're doing a lot of running in the swimming pool, we're doing a lot of work on cross trainers, we're doing a lot of strength exercises - mainly squats and press ups, that sort of thing. I've never felt so fit in all my life to be honest with you.
Would you do this if you were sighted?
The easy answer to that one is I honestly do not know because if I was sighted my life would have taken a different trek. But the answer possibly is yes because one of my ambitions was to join the army and sadly as I was going blind I couldn't do that. So yeah I probably would have done it, I'd have probably done a lot more things besides as well.
A very fit and chirpy Dave Heeley, I must admit these days I'm just happy to get to the corner shop myself.
One more thing Mani, you've been having a look at some of the reaction to last week's item about hate crime against visually-impaired people. You'll remember we reported the findings of a survey commissioned by Action for Blind People, which claimed that 20,000 blind and partially sighted people were physically abused in Britain every day; an even greater number attacked verbally. We questioned these figures, Action for Blind People stuck to its guns that the survey was accurate. Mani, what have people been telling us?
Well one listener identified with one of our contributor's - Denise Jarrett's - who had suffered abuse and was told by the police that she was wasting their time because she wasn't able to identify them. This listener says that he's been attacked twice but because he hasn't been able to provide descriptions of the people who attacked him police haven't been able to take up the inquiries.
Nic Coleman, who's sighted, simply wasn't impressed with the figures of the survey at all.
"What a huge joy to hear Peter take the figures and their proponents to the cleaners," he says. "Thank God for Peter's common sense approach that slapped the figures down to where they should be - in the realms of the alarmist gutter press."
And S. Bjorck is someone who doesn't think that we should have broadcast the figures at all as it might put some sighted people off talking to visually impaired people. They go on to say that: "some blind people can be very aggressive."
Thanks very much Mani.
Well, we do believe that if it is happening, it should be reported; and if it's not happening, it should be challenged. So I'd still like to hear your own stories and experiences about this, and we do intend to discuss it further, and in particular how you can combat hostility as a blind person without aggravating the attitude further. You can call us on 0800 044044 or contact us at In Touch via email. That's it for today, from me Peter White, a very busy Mani Djazmi, my producer Cheryl Gabriel, and the rest of the team, goodbye.
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